One million Brits suffer little-known condition that causes eerie hallucinations

24 January 2023 , 08:43

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CBS affects those with sight loss of 60% or more (Image: Getty Images)

At least a million people in the UK are suffering from a condition that can cause terrifying hallucinations – but over a third of medical professionals are unaware of it, research has found.

Charles Bonnet Syndrome (CBS) affects visually-impaired people who have lost at least 60% of their sight, and can cause vivid hallucinations that range from disturbing to terrifying.

These intense images are caused as loss of sight stops regular messages getting from the eye to the brain, leaving the brain with nothing to interpret – and therefore creating its own visions.

However, a poll of 1,100 health experts – including doctors, GPs, and optometrists – found that 37% are not aware of CBS, and 28% would not feel comfortable diagnosing the condition.

But more than a third of healthcare professionals have not heard of the condition (Aire Images/Getty Images)

Almost four in five (78%) would look to rule out mental illness or dementia first and foremost before diagnosing a patient with CBS – even if they believe that's what they are experiencing.

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And of the professionals who are aware of it, a tenth admit they have a very limited understanding, and half (51%) would like to learn more.

But one in ten (11%) healthcare experts who are not familiar with CBS admit they can recall visits from patients who had displayed symptoms of the condition.

CBS is widespread among the blind and partially-sighted community, with research suggesting about one in five people who experience sight loss develop it – meaning at least one million people in the UK are currently living with the condition.

However, the condition is not taught in medical schools – and more than three-quarters (78%) think it should be highlighted more when studying for a medical degree or qualification.

The research was conducted by Esme’s Umbrella, the only UK charity which offers support to those who live with CBS and their families.

One of its volunteers, Nina Chesworth, who has yet to receive a diagnosis after four-and-a-half years, spoke about her experience with the condition.

She said: “I first started experiencing the symptoms of CBS straight after I lost sight in my left eye after a traumatic incident.

“After waking up from surgery, I was seeing a lot of blaring colours, but I was just told it was my mind playing tricks on me.

“As time went on the colours began to develop into shapes, then ghost-like images – faces which were Picasso-esque, zombies, and animals.

“This became so intense and frightening, so I researched what the visions could mean – and it wasn’t until I found out about Esme’s Umbrella and reached out to them that it started to make sense.

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“The charity invited me to meet Professor Dominic Ffytche, the UK's lead researcher into CBS, and he explained all about the condition – and I was able to speak to others who were experiencing it, too.

Judith Potts founded Esme's Umbrella, the UK's only CBS support charity (Esme's Umbrella)

“But my visions became more and more complex, and I couldn’t cope any longer – at this point I spoke with my GP, but they had not heard of it.

“This was four-and-a-half years ago, and I still haven’t had an official diagnosis.

“My ophthalmologist also didn’t diagnose it, and after seeing several specialists, they all had different views of what it might be and what was causing it.

“Only one said they would look into the possibility of CBS after I told them what it was.

“It was from Dominic and Esme’s Umbrella who gave me a real understanding of why it was happening and what to expect.

“It was a massive relief knowing it wasn’t a mental health issue, and it is a possible natural effect of sight loss. This made me feel confident again to deal with my situation.”

The research also found one in four of those polled are not aware of the one specialist CBS clinic in the UK, based in London.

And nearly a fifth (19%) would not know where to signpost a patient with CBS for support with the condition, outside of the health service.

Three-quarters of medical experts would look to rule out dementia or mental health issues first - even if they suspect CBS (Esme's Umbrella)

A further 27% would not feel confident suggesting coping strategies for a patient who is experiencing hallucinations.

But when it comes to a condition like CBS, 83% believe it is important the patient’s family have a full understanding of what their loved one is experiencing.

Consequently, 86% make an effort to signpost families to charities to support them, while 88% will signpost those who have been diagnosed to specialist organisations.

And overall, eight in ten (79%) feel charities can play an important role supporting patients with medical conditions, the OnePoll research found.

Judith Potts, the founder of Esme’s Umbrella, said: “While awareness of CBS is beginning to get better, there is still a clear knowledge gap about it.

“And as a result, stories like Nina’s are still far too common among the blind and partially-sighted communities, where they can really struggle to get a diagnosis for CBS.

“Particularly during these periods where people are being told they might have a mental illness or dementia, it can often cause a lot of unnecessary levels of distress.

“That’s why at Esme’s Umbrella, we want to do our bit to ensure anyone who is living with CBS has access to support, as well as a network of others with lived experience, to help them cope with the symptoms of the condition.”

Andrew Young